Wednesday, August 24, 2011

This morning we got up a little earlier for E's first day of First Grade. I figured it would take a little longer, since there would be No Carrying. NOPE!

Elena didn't sleep great...little aftershocks before bed didn't help either. Still, after only a little whining, she got up to face the day. We had picked out a dress for school the night before. She was all ready, waiting to sound the "Bus Alert", when I realized we had 10+ minutes before the bus came. So, one crutch in hand (and the other in mine), we went down the front steps to wait and take a few pictures. Vivian was upset she wasn't going to school.

When the bus arrived, her driver was really excited to see her. And to the surprise of everyone, she went for the bus step and handrail BY HERSELF and got herself aboard! That step is huge! All our work this summer of getting into cars by herself really paid off--getting on the bus was a "piece of cake", as E likes to say. YES!!

Tuesday, August 9, 2011

After we checked out of the hotel, we headed for the beach. We planned on going to Grommet Island, an "accessible playground", that we heard about from our friends The Teasters.

But...it was HOT. And midday. A lot of Grommet Island was shaded, so that really helped.

Elena liked the sound board

Snow Cones

Viv "surfs"

Overall, I thought the playground was great. It was wide and flat, and lots for the kids to climb on, around, was very interactive. If it was a cooler day, I think the girls would have played on it more. As it was, they really wanted to go in the cool waves.

The beach terrain was...dissapointing. The only flat part was dry, deep sand--too hot for the girls to walk on. Once we got to the wet sand, it was packed, but sloped steeply downhill, and not much room between the packed sand and the water. I told E to try to walk--here is E's best sand walking to date!

I didn't get a chance to raise the Beach Walker. Right now, it stands as high as her loftstrand crutch handles, which I thought might be fine. NOPE. It needs to be raised 4-6 inches. I didn't have the time to do it before the trip. Even if I had, the slope of the beach would have still been a problem.

The other surprise was the strength of the waves--we had to keep a handhold on each kid at all times. Even the tiny waves knocked Vivian over, when the water was only calf-deep. Grandma and I got a workout hanging on to the kids--especially when they wanted to go "wave jumping", which translates as "sore backs for grownups". Elena did do some good standing in the water, just as the water splashed over her feet. She stood there smiling for over a minute, her knees sinking deeper toward her midline as the water washed sand away from where she stood.

I was very proud of my girls--Vivian for being good while missing her nap, and E for handling herself so well on the beach. But places like these are hard...to see other kids running, jumping, boogie boarding, swimming, their parents teaching them to stand on a surfboard...sometimes keeping my smile on is difficult b/c my heart is heavy.

Last weekend was Elena's Daisy Troop trip to Nauticus! The Daisies were going to earn their "courageous and brave" petal, by facing their collective fear of sharks--by feeding them lunch! We had been preparing for this by watching old Shark Week videos. Elena's reaction: "I think if you are going to be in the water with sharks, you should be in that cage."

As with every trip to a new place, I try to plan ahead...where will we park? How will E get around? Will she get too tired? What is the terrain like? Nauticus has 5 handicap parking spaces, all of which get filled up. There is no parking lot...and I wasn't sure if Elena wanted to be in a stroller. I asked Nauticus if there was a shuttle, or a hotel nearby that might provide transportation. There was, and the Norfolk Sheraton is in walking distance to Nauticus--but not Elena walking distance. So, I decided to make a weekend of it. We would stay at the Sheraton and try to get a parking space, and if not, I'd drop off the family and walk to the museum to meet them.

When we arrive at the Sheraton, I was disappointed to find out that there was no parking lot--only valet, b/c the parking garage was two blocks away. So handicapped patrons have to pay extra to park, while able bodied peers do not? I was pissed off. (It wasn't on my bill when I checked out. Maybe that's a typical policy for those with HC plates/placards?)

We spent Friday eve with a friend of mine and his family. My girls learned all about Lightning McQueen and race cars (he has two boys). The evening was wonderful, big thanks to the O family!!

Saturday it was off to Nauticus. We got a h-cap spot outside, and since I had both E and Vivian, I took the sit n' stand. Good thing--the museum ended up being WAY to much walking for Elena, so she rode during the long parts.

Viv outside, doing her "smile face"

INSERT SHARK PICS HERE

At the "Shark Workshop"--how they move, what their skin feels like, how big they are, and the big shark jaw!

E in the Shark Cage

How E measures up to a Great White Shark

Petting a horseshoe crab

The second big workshop was "Robotics". Basically, an overview of how submarines and other submersibles move around underwater. So, the challenge was for the Daisies (working in small groups) to create a submersible robot out of PVC pipe and three motors (taped to PVC pipe). Buoys were strapped to the structures so they would float on the surface.

Elena was EXCITED! Working in groups, problem-solving, and building together isn't easy for 5-7 year old girls. Immediately, the girls started assembling pieces individually (if they could reach some), without regard to the task at hand. With some open-ended prompting by myself and the other parents, the girls were able to work together. They shouted out ideas, construction plans, and how they expected their creation to move. I was VERY proud of E and her group! They were the only ones to have a more "freeform" shape. I think our group of girls had less input from adults/demo models, so this was entirely their creation. They were very excited that it floated, and each Daisy had the chance to drive it using the motor switches. Elena did a great job piloting her robot!

After that, some of the girls headed to the Labyrinth. It was in another building, and was a "hunt-or-Atlantis" themed maze, with legends, ocean conservation, mythology, and art throughout. It was really amazing, and the kids loved it. I only am showing a few pictures--of Elena moving around on her own (mostly running).

Tuesday, August 2, 2011

This weekend, our Fantastic Nanny Annette and I took the girls to the Children's Museum of Richmond. I knew it would get crazy crowded, so we got there right when it opened. Here are some highlights.

Viv on the Dinosaur

Elena working the Apple Tree (note; she has to start walking with her right and left, respectively, in the videos below)

Going down steps in the Treehouse. She wants one hand on the railing, and one hand held; I refused to hold her hand, as the steps were relatively small. I love the way her foot is mostly straight when she goes down--that was a LONG TIME COMING!

In this vid, her hand is too high when going down the second step. She still isn't confident to move her hand to the right place each time when doing steps, up or down. She'll get there!

We broke for lunch, and came back to play for a while. The place was PACKED by that time. There were a lot of kids asking Elena questions about her crutches/braces, and staring. None were mean; actually, some were quite nice. But E got tired of the questions. She stopped answering them. At one point, we were waiting for a Magic Show to start. We were sitting on the ground, waiting patiently (unlike some other kids). One very nice boy asked Elena "what happened to your legs?", in a very nice, curious tone.

"NOTHING."

WHOAH. I mean, my eyes got huge and I sat up straighter--E's tone was FINAL. That kid has a serious tone of voice!! The boy snapped right back around, almost scared to look at us. E's response was unexpected. But, in a way, I'm really proud of her, for letting people know that sometimes, it's not okay to ask questions. I was just a little shocked, that's all.

Here is Elena and I going for a ride. Our neighborhood is HILLY. This gives you an idea of how fast we go (sometimes). E really does help when pedaling uphill--but sometimes, I can feel her really holding on with her hands (trying to push against the handlebars as she pedals) b/c she can really jerk the bike. But, overall, I feel relatively safe riding around with her. I'll take some pictures of her pedal setup--she is strapped in well, and her only rule when on the bike (besides wearing a helmet) is to HANG ON AT ALL TIMES.

She really loves it. I certainly sweat a lot, both from the biking and anxiety with E, but we have a great time.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.